What People with Dementia Need

Several years ago, Pat told me that his fundamental philosophy regarding human nature is that we all need "to have something to do and someone to love." I think of that often now, because one of the great burdens of dementia for the person who has it is that they can't do what they once could. And as time goes by, they can't do much at all. I'm sure that a lot of the emotional and behavioral problems that doctors identify as part of brain degeneration are also due to this central frustration.

There is a belief about old people in our success-driven culture that fundamentally relegates them to the waste pile of non-productivity. Our notion of retirement is central to this belief--the idea that the old no longer seek to work, that they want to spend their days playing and resting, essentially doing nothing. I've met very few people over 65 who feel this way. Most women and men want to contribute to the world around them as long as they can. They just want to have control over their productivity for a change, to be able to choose with whom they interact and to focus on creativity and happiness rather than working to meet someone else's goals.

American society discounts the value of the work done by the elderly. The caregiving, the sharing of spiritual wisdom and life experience, the actual professional work that many pursue well into their nineties. Our stereotype is that old people are not worth much. I am fairly certain this belief is at the heart of the medical neglect of Alzheimer's disease. In the eight years since Pat began showing symptoms of the disease, there have been NO new medications released to treat dementia. Not one. Clinical trials are all over the map; there is no concerted effort, as there was with heart disease in the 1980s, AIDS in the '90s or breast cancer since 2000 to find a cure or protocols for symptom management.

Why? Because doctors, politicians, the media and the general public believe that dementia is a disease that afflicts people who are already non-productive. So, in essence, who cares? Grandma's getting old, she forgets things, she can't feed herself. Well, that's just how it goes, right?

Not right. Brain disease is no different from any other organ disease. It has a cause (or causes). It has a genesis and process. Some populations are more vulnerable, but that doesn't mean that they are the only ones afflicted or that they are less valuable and therefore less worthy of a concerted public health effort to find effective treatments.

Alzheimer's Disease is the only major killer of adults to have no effective medical treatments that prolong life and well being. Funding for research has been a joke, with researchers having to appeal through the Alzheimer's Association for individual donations to aid their work. Only recently, with the introduction of the National Alzheimer's Plan consequent to legislation in the 2010 Congress, has funding for research toward effective medical interventions been part of a proposed national budget. And yet, the cost of Alzheimer's and other dementias in terms of lost wages (of people with the disease and of their caregivers), lost tax payments, unpaid caregiving and burdens on the Medicare and Medicaid systems now stands at $210 billion annually. Yes, that's BILLION.

A quarter of a million Americans suffer from early-onset dementias of the kind which overturned Pat's life when he was in his mid-fifties. The vast majority of these people, both men and women, are in the workforce when they become symptomatic. They are parents of children in high school. They volunteer in civic organizations, they pay taxes, they own houses with mortgages. And then, in the space of a few years, they are unable to work, keep up their property, manage their money, guide their children.

Some of these dementias move at a horrifyingly fast clip--Pick's disease, for example, can take away all reasoning and speech in less than two years and kill in less than three. It typically targets people in their late forties to early sixties. As the Baby Boomers and Gen Xers age, I believe the incidence of early onset dementia will increase. Once thought to be primarily genetic, this set of diseases is now known to be much more complex. Smoking, alcohol and high exposure to heavy metals and other pollutants all may be contributing to higher numbers of mid-life adults developing memory problems that can lead to full-blown dementia.

These are a few of the facts that underlie what is not only a disease process but a profound social, financial and spiritual challenge for people who develop it, those who love them, the medical profession and public.  health policy makers. In my next blog, I will take a look at current practices in dementia caregiving and new directions that I believe must be pursued with urgency.